@LisaMWatki That @ukfuturehealth somewhat 'buries the lede' on its intention to construct a giant £212 million 👇 #DNA / #genomic database in its patient literature is somewhat concerning...
find-tender.service.gov.uk/Notice/019818-…
@LisaMWatki @ukfuturehealth ...not to mention the £62.5 million+ they'll be spending taking people's #bloods, etc.:
find-tender.service.gov.uk/Notice/005068-…
@LisaMWatki @ukfuturehealth Of course, #OurFutureHealth had to get its money from somewhere.
I'll give you one guess as to where...
ourfuturehealth.org.uk/partners/#htoc…
@LisaMWatki @ukfuturehealth ...and that sort of cash comes with a few #QuidProQuos - like early #commercial access 👇 to NHS #patients' data...
ourfuturehealth.org.uk/partners/#htoc…
@LisaMWatki @ukfuturehealth ...the possibility of '#secret R&D' 🤔
That only a "majority of researchers will [have to] return a copy of their results" doesn't sound #transparent at all - and it certainly isn't #OpenScience...
ourfuturehealth.org.uk/partners/#htoc…
@LisaMWatki @ukfuturehealth ...then there's #CarteBlanche for full-on #CommercialExploitation, with no ironclad guarantee that #NHS patients will even benefit!
Exactly what sort of '#charity' is this?
Are these terms being made clear to every '#volunteer'?
ourfuturehealth.org.uk/partners/#htoc…
@LisaMWatki @ukfuturehealth ...and, as if all that weren't enough to 'sweeten the deal', #industry also gets a bunch of seats on @ukfuturehealth's Board(s).
No #ConflictOfInterest there at all, of course!
ourfuturehealth.org.uk/partners/#htoc…
@LisaMWatki @ukfuturehealth There *is* an opt-out 👇 - from being sent a letter, that is.
This seems a little bizarre; how would people even *know* to opt out of being "invited" to volunteer for a scheme they'd likely never heard of until they receive the letter?
"#Marketing" 🤦♂️
digital.nhs.uk/services/nhs-d…
@LisaMWatki @ukfuturehealth For reassurance, those who have already done a #NationalDataOptOut* for Planning & Research to @NHSDigital should NOT be sent a letter from @ukfuturehealth.
(It'd be interesting to hear if anyone who's done an #NDOO *has* been sent an #OFH letter...)
__
*nhs.uk/your-nhs-data-…
@LisaMWatki @ukfuturehealth @NHSDigital As with every scheme using #consent as its basis, the question is how well #informed your decision is. It's not really a free #choice if you don't know what you're choosing!
I wonder how much of this [Thread] would be news to people who will or who have already #volunteered?
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